Psst! Jess needs funds for urgent, live-saving spinal surgeries & subsequent recovery.
"The time has come," the Walrus said, "to put our pride aside. To lean into the folks we love so that we may survive."
Okay, so botched Alice in Wonderland quote aside, HI! I'm Jess, the founder of The Failure Ball, a national mental health nonprofit that celebrates screw ups & raises cash in the name of suicide prevention.
I also happen to be really friggin' sick right now, and kinda fighting for my life. (Whomp, whomp.)
At the start of June, I bolted awake from a lovely dream about cleaning a Taco Bell, and instantly knew something was deeply wrong. (Not because of the dream — I love me a cheesy gordita crunch every now & again.)
Rather, the panic was from extreme disorientation. I was seeing everything in triple, uncontrollably yarfing and trying not to aspirate, and couldn't lift my head up, let alone crawl into the bathroom.
Since then, it's been 8 weeks of hospital stays, blood patches, and the mental and physical gymnastics of diagnostic tests.
Finally, I am SO stoked (and terrified) to say that I finally have some answers.
As it turns out, I have a thing called Tarlov Cyst Disease, paired with a high-flow cerebral spinal fluid leak — which basically means the nerve roots coming out of my spine have created tumors filled with cerebral spinal fluid.
When they burst, the fluid pours everywhere into my body, *except* my brain. (We need it in my brain so I can do some cute things like not seize, stroke out, or die. )
I have multiple cysts on both sides of my spine, from my brain stem down to my butt, compressing nerves along the way and starving my brain of essential nutrients. Some of them are no biggie, but the two big tumors in my neck are making it hard to keep kickin'.
Now for the real pity party. (I'll bring the streamers and cake.)
Over the last 2 months, my life has come to a screeching halt. The main symptoms are blinding headaches within 3 minutes of sitting or standing, near-constant nausea & vomiting, and extreme nerve pain radiating down both arms and into my hands — making them essentially unusable. (Shoutout to my husband for typing this all up for me.)
Extreme blurry vision is a thing, plus intense back pain, and the deepest depression I've ever felt. I also have weakness in half my face and can't raise my right eyebrow. It makes me look super wry though, and thus shall henceforth be known as my wry-brow.
The cherry on top of this stupid sundae: I'm experiencing something pretty devestating, called "brain sag."
Since I don't have enough spinal fluid to suspend my brain in my skull, it's resting on the bottom, crunching my neck and back, and giving me memory & cognitive issues that researchers compare to the early stages of dementia.
With the gaping wounds in my spinal sleeve, recurring bacterial meningitis is a big fear, and there's about a 1 in 10 chance I'll croak in the next year if I don't get myself sealed and healed soon. (Gosh, that's surreal to say.)
NOW THE GOOD NEWS!
There are only two surgeons in the country who specialize in treating this, and I've somehow managed to score surgical consults with both this August.
Unfortunately, they're both out of state, and once the procedures happen, I'm looking at a few months of healing from multi-level spinal surgery and the strictest bed rest this side o' The Mississippi.
As both the founder of a nonprofit, and sole proprietor of a copywriting studio in Denver for the last decade, my client work has had to be halted & refunded until I can find my footing.
Being smart, sharp, creative, and strategic is how I make my money — and contribute to half of everything in our household. Now, my near-empty savings account could be the punchline to a bad joke.
"You hear the one about the girl with a crummy spine? She's more broke than her spinal sleeve! Har, har, har."
I'm looking for some help covering flights, astronomical surgery costs, and 2 - 3 months of required recovery time this fall.
As someone who's been paying my bills and working since age 14, it makes me exceptionally itchy to ask for a helping hand, and someone to hold mine right now.
But at the end of the day, I've never been this afraid — partly because I've had over 30 needles shoved into my spine so far, and partly cus I feel wildly exposed by speaking up and saying, "Hey, I'm actually really not okay."
But hey. I'm actually really not okay.
Like, there's something to be said for having a hospital chaplain give you The Talk and ask which prayer you prefer cus you were admitted in such bad shape.
That something is: WTF.
Is there any chance you're down to help me bridge the gap — so I can get back to kicking ass?
Either way, thanks for being here with me, m'dudes. I love you to the moon and back. And then all the way to the moon again. <3
Fundraising team (2)
This team raised $29,247 from 375 other donations.